Thyroid removal

[Gorgeoussunshine]

My thyroid was overactive, nothing would control it. Three years ago I had I surgically removed. Has anyone else had their thyroid removed

[Greekchick]

Hi Gorgeous,

I had mine removed for Graves’ disease and toxic multinodular goiter 4 months ago. What would you like to know?

[Gorgeoussunshine in reply to Greekchick]

Is it usual to feel crap constantly

[Greekchick in reply to Gorgeoussunshine]

Hi again,

OK - just saw your last post. You shouldn’t still feel like “crap” unless you are not getting enough meds or the meds you are currently are on are not the right combination.

If you can post your latest blood work with ranges, we can get a handle on why you feel that way. In three years your body has changed and even with “normal “ blood work - you can be on range but not optimal for you.

For example, just before my surgery I had “normal” bloodwork and yet I was the sickest I have ever been since my diagnosis 25 years ago.

So any info you can provide will help me to give you some assistance. And I’m so sorry you are feeling so bad.

[Gorgeoussunshine in reply to Greekchick]

I don't have my blood test details, I can look at my notes. I gained three stone, told my gp two weeks ago that I don't feel that good. Also starting menopause at this time

[Greekchick in reply to Gorgeoussunshine]

OK - take a look at your notes. The other thing that can be compounding how you feel is the start of menopause. You can also gain weight, feel sluggish and tired, have insomnia and generally feel like “crap”! And of course, the loss of estrogen will also affect your entire endocrine system. So we need to sort out what is causing what - is it your thyroid or is it menopause? And then, what can be done to help you feel better?

Complex problem and not easy to answer simply . I was post menopausal when I had my TT - I’m 63 - but I had a terrible menopause and was on HRT for 5 years..I truly felt the same way as you. And that on top of hyperthyroid disease. I have to say I like a different person on HRT. I am not recommending it - it is not right or appropriate for everyone, but it helped me to survive the worst part of menopause and deal with my thyroid too. Funny enough , my thyroid was much better when I was on HRT.

Again, I am not a doctor- and inwould

[Greekchick in reply to Gorgeoussunshine]

Sorry - pressed send too soon. I would never recommend any medication to anyone without consulting doctor first.

So looking forward to hearing from you to see what’s going on. Wishing you all the best today.

[Gorgeoussunshine in reply to Greekchick]

I have started hrt a couple of weeks ago, it's slowing d

[Gorgeoussunshine in reply to Gorgeoussunshine]

I also hit send too soon. Hrt is slowing down the flushes, so here's hoping

[Greekchick in reply to Gorgeoussunshine]

I’ll keep my fingers crossed for you. HRT saved my life - I was totally dysfunctional - I tried to stick it out without it for 2 years - but finally decided I also needed a life. Here’s hoping for you. All the best!

[Batty1 in reply to Gorgeoussunshine]

Menopause and thyroidectomy equal disaster.

[Gorgeoussunshine in reply to Batty1]

Yes, double symptoms

[SlowDragon Administrator]

Are you now well?

Or do you have remaining symptoms?

How much Levothyroxine are you currently taking?

There are lots of members on here, after complete thyroidectomy

If you have questions you want answered......ask away

[Gorgeoussunshine in reply to SlowDragon]

I take 175mg of thyroxine, often feel drained with aches and pains, wondered if this is usual. Bloods were OK two weeks ago

[SlowDragon Administrator in reply to Gorgeoussunshine]

Presumably you had Graves before thyroidectomy?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially after Graves

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Many people, after complete thyroidectomy need addition of small dose of T3.....but FIRST Step is tonget FULL Thyroid and vitamin testing

Come back with new post once you get results and ranges

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

[Gorgeoussunshine]

That's interesting, my bloods were normal two weeks ago

[pennyannie]

Hello Gorgeoussunshine

As a point of reference a fully functioning working thyroid would be supporting you with approximately 100 T4 + 10 T3 daily.

I just think that if there has been a medical intervention and the thyroid removed or ablated with RAI that both these vital hormones need to be put on the patients prescription for if, and maybe when.

Some people get by on T4 alone, some people simply stop converting T4 to T3 at some point in time, and some people simply need both these vital hormones dosed and monitored independently to bring them into balance and to a level of wellbeing acceptable to the patient, which usually means both these essential hormones will be in the upper quadrants of their relevant ranges.

It is imperative that you are monitored on T3 and T4 blood tests, and not a TSH blood test.

The body runs on T3 and the loss of the your own thyroid's 10 x T3 is equivalent to approximately 20% of your daily requirement. Your conversion of T4 into T3 might also be compromised if your ferritin, folate, B12and vitamin D are not optimal in their ranges.

The thyroid is a major gland and responsible for full body synchronisation, including your mental, physical, emotional, psychological and spiritual wellbeing. It is the conductor of your whole body's orchestra including your metabolism and temperature control, and if not optimally medicated, initially the slack is picked up by your adrenals, but over time they will become overworked and the symptoms of hypothyroidism will start to appear.

You might like to take a look at the following :-

Elaine Moore has Graves Disease and was treated with RAI. she found no help in her recovery in the late 1990s so wrote a book :- Graves Disease A Practical Guide : she has now a very well respected and researched website in the United States and it definitely worth dipping into :

Barbara S Lougheed :- Tired Thyroid, is another lady with the same disease and her book goes into much detail debunking the TSH blood test - I believe she now also runs a blog under the same title heading :

Your Thyroid and How to Keep it Healthy is a very good book for all things thyroid. Written by Dr. Barry Durrant - Peatfield, who has himself hypothyroidism and is an easy, sometimes funny, insightful " goto " especially relevant, as living without this amazing little gland needs understanding so we need to know how to compensate for the loss.

It's a massive learning curve, there is a lot to take in and understand.

I had my thyroid ablated in 2005 because of Graves disease and am now with Graves, thyroid eye disease and hypothyroidism and am now self medicating.

[Gorgeoussunshine in reply to pennyannie]

Thank you, sounds very interesting. I will certainly research these

[SlowDragon Administrator in reply to Gorgeoussunshine]

First step is to get full Thyroid and vitamin testing, usually privately as NHS often refuses

[Hidden]

Yes mine was removed in Oct 2015. It has taken me nearly two years to find my right dose. I never visit the GP just have private blood tests and source my own NDT.

I feel very well at 72 years old in fact I have started jogging again.

[jgelliss in reply to Hidden]

WOW !!!! Your A Great Inspiration . Determination and Hard Work Pays off . You proved that their is a light at the end of the tunnel .

[LAHs]

YES! Hundreds of us and we are all on this site. You've come to the right place.